Adam Lanza, the 20-year old shooter who took the lives of 20 children and 6 adults at Sandy Hook Elementary in Connecticut after murdering his mother and subsequently taking his own life, has brought autism to the forefront. Not mental illness. Autism. Why? Because the media is announcing far and wide that he apparently had Asperger’s Syndrome. Adam Lanza was an Aspie. Now, I know that correlation does not imply causation, but, in the wake of such a national tragedy, people want a reason. They need a reason. For God’s sake, why?!
My little voice on my little blog may not make one iota of difference, but I want to take a moment to very simply explain autism. What is autism? Frankly, no one knows. That’s right. No one knows what causes autism although we are learning more. Why do I even bother to blog about this? Because autism spectrum disorders are essentially what I do for a living. I am a co-owner of a corporation that is part autism “think tank” that collaborates with hospitals in North America and universities, and the other part produces materials for teachers, professionals, parents, and children on the autism spectrum. Also, I have an autistic daughter, and my business partner (and dear friend) is also on the autism spectrum as is her daughter. This is a subject that I do know a bit about although, it seems, never enough, and it’s personal to me.
So, what’s the deal? Why do we not really know what autism is? Because we don’t know what causes the symptoms. What do we know? It’s a neurobiological disorder, but we can’t run any medical tests to detect it. Let me explain to you how autism is diagnosed. Firstly, autism is officially called an “autism spectrum disorder” because the symptoms range from ‘high functioning” to “mid functioning” to “low functioning”. This functional part of autism lies with behaviors, communication, and activities of daily living (ADLs). How functional a child is determines where they fall on the autism spectrum. Autism spectrum disorders affect three parts of a person’s life:
- social interaction
- communication both verbal and nonverbal
There are three main types of ASDs although the DSM-5 will be changing the labeling:
- Autistic Disorder
- Asperger’s Syndrome
- Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS)
The diagnostic procedure involves observation by clinicians, parental reports, severity of behaviors, neuropsychological reports, age of onset, interference of behaviors, interactions, and communication issues with ADLs, and other criteria.
My daughter Milly was diagnosed with Asperger’s Syndrome at the age of 4 by the Early Intervention department of our school district. Strangely enough, our school district has a stellar EI department. To be honest, she was a nightmarish baby. Milly was my fourth (and last) baby. She was born screaming, and she didn’t stop screaming for two years. I’m not embellishing. I took her to the pediatrician numerous times in an effort to find a solution. Did she have acid reflux? She did. Was she in pain? Was my breast milk tainted by something? I changed my diet. She was miserable all the time. The only time she wasn’t screaming was when she was attached to my boob which, as it turns out, was quite often. She didn’t sleep either. So, she ended up in bed with me attached to my breasts–all night long. Wiggling. Crawling. All over me. For four years. She refused to wean.
By the time she could sit up on her own, she began building walls around herself out of the Lego Duplo blocks. If one of her sisters tried to play with her, she would scream louder. Why? Someone touched the Duplo wall. A 7-month old infant building Lego walls around herself in a recognizable pattern. The tales I could tell of her obsessions, her behaviors. And the kicker? She could speak at 18 months. Full sentences. The next time you meet an 18 month-old baby, imagine them having a conversation with you: “I quite liked my tea. It was delightful.” Direct quote. I knew something was wrong. If she wasn’t screaming, she was nursing. If she wasn’t nursing, she was speaking to me like a tiny professor. When she was 3-years old, she wanted me to read her novels. I was reading Charles Dickens to her, and she would sit for hours completely engrossed. Then, she’d have some massive meltdown.
When I finally found a developmental pediatrician, he diagnosed her as having three separate anxiety disorders, Sensory Processing Disorder (SPD) or Sensory Integration Disorder, and called her “artistic”. He completely misdiagnosed her. Why? Because she was a girl. Had she been a boy, she would have received a correct diagnosis. There is still a bias in the medical community around girls having ASDs because historically more boys have ASDs than girls. She has since been diagnosed medically as autistic as well. This leads me to a crucial point.
When you meet an autistic person, s/he will most likely have co-morbid conditions. Milly has SPD as well as profound anxiety. In fact, many, many ASD people have SPD. There is some talk in the therapeutic and medical community about SPD possibly being a form of autism. It’s almost always present in one form or another where an ASD is diagnosed as is some form of anxiety. What else will you find? Oftentimes, you might find depression. There are also cases of bipolar disorder, too. All this is to say that an ASD is rarely diagnosed alone. There are usually always co-morbidities. Did you know that autism and schizophrenia tend to run in families? What’s more, the same gene that causes bipolar disorder causes schizophrenia. Years ago, autism used to be considered a psychotic disorder. Of course, it’s no longer considered to be a mental illness.
What I’m pointing out is that the media is not doing its job when it sensationalizes Adam Lanza’s possible autism diagnosis because if he had autism, then he probably had a co-morbid mental illness, too, which would have most likely been the cause of his psychotic break–not autism. Autism does not cause psychosis. It’s not a psychotic disorder. For a person to go on a killing spree as well as commit matricide and suicide, there would most certainly be psychosis. Apparently, that psychosis was untreated as well as that underlying condition. Where autism possibly comes into play in this scenario is around verbal communication. ASD people often struggle with verbal communication. If Adam Lanza was struggling with a psychotic disorder, then he may very well have struggled with talking about it. Because ASD behaviors can look odd, it might have been difficult to judge his slip into psychosis from his normal, everyday behaviors. ASD people are often withdrawn and obsessive anyway. They can be suspicious and paranoid by nature. Self-regulation is so often a problem for ASD people so his mother may not have been able to decode his daily behaviors. His psychotic behaviors, to her, may not have looked that different from his autistic behaviors particularly if he was wont to isolate himself and didn’t talk very much. What would she have had to go on?
Lastly, mood and psychotic disorders often emerge in late adolescence and the early twenties. He may have been in prodromal schizophrenia and had his first psychotic episode. Honestly, we’ll never know, but it’s a good possibility. The majority of schizophrenics are not violent, but Adam Lanza was raised in a home with access to weapons. His mother also taught him how to use them because it was her hobby. I’m not making a political statement here. I’m commenting on the culture of his home. It’s hard to know what a psychotic mind will do when it breaks. Grace has never been violent a day in her life. She is one of the gentlest souls I know, but she stabbed herself when she was psychotic.
Had I not been a mother who was constantly home, always around my children, hypervigilant because of my background, would I have recognized Grace’s change in behavior so readily? I have been told that we were lucky to have Grace correctly diagnosed so early. I started documenting her symptoms very early because I just had a hunch. Not all parents are like me always on alert. It would be nice to be a more relaxed parent. What if I were a working mother, out of the house, rather than self-employed able to be home? What if Grace were 20-years old? How would anyone know if she were slipping into mental illness if she were already “odd” and withdrawn?
I think it’s very important that we know the truth about autism, how it’s diagnosed, and what it looks like because the media is not going to do its job in properly explaining the nuances. The media’s goal is to make sure that you watch your television. Period. The last thing that we need is more stigma around mental illness with autism being dragged right behind it.
I want to know what went wrong in the Lanza family that caused a 20 year-old young man to commit such a heinous act, but I also want the information and discussion around this tragic event to contribute to the greater good so that those 28 lives weren’t lost in vain and fear of those who are different or mentally ill doesn’t hold sway over a grieving nation causing alienation and vilification of innocent people.